out of the blue illness and other happenings

When last I left you, I was going to be going up to my parents’ house for Easter weekend. My aunt Mia was visiting from Sweden. My sister and nephew were also there. Aside from Easter, we were also going to celebrate my dad’s birthday. A fun weekend was in store.

So I left work around 7 pm, went to get gas, and headed north. I guess about halfway into the drive, I noticed that my shins felt itchy. I didn’t think much about it. In fact, once I got to my folks’ house, Sandy & I went to the store and we all chatted a while before I remembered that I wanted to check out my lower legs. When I did, what greeted me was what I expected. Small little red dots. I’ve had them before, but I’ve never been able to pinpoint why. I’ve just chalked it up to heat, stress, being on my feet. Any number of reasons. They’re usually gone by the next day.

On Saturday, Sandy & I took Dad to dialysis, stopped at Starbucks, and went home. Then we all went to lunch at El Cholo. So delicious! I had a beer and the filet mignon tacos. We all had a great time!

El Cholo

Sandy & I went to get Dad from dialysis, then we all (except Mom & Dad) loaded up in my car to drive to Canoga Park to go see the Acoustic Duo. They were playing a house concert so it worked out great that Mia could see them, plus Sandy & T. We arrived shortly before the opening band finished. We saw Han & C out in the front where they informed us that Beau Bridges, the actor, was in attendance! We went through the house to the backyard where the show was going on. There was a pool with a couple open chairs that was not too close to the stage, but it was still fine to see and to listen. We decided that’s where we’d be. We also spotted Mr. Bridges fairly quickly!

After the opening band, it was potluck time, then shortly after that the Acoustic Duo played. It was so wonderful to hear them again. T & I sat on the diving board, while S and Mia sat in the chairs. It was a beautiful night! Sandy shed a few tears at a couple songs, and Han made me cry when he talked about Kerrville, Texas and the folk festival there because the founder of the festival recently passed. It was a very moving tribute he gave. They got a couple encores which was awesome. And close vigilance kept us aware of Beau’s continued presence.

After the show was really over, Han was walking over to us at the side of the pool, and Beau Bridges and his wife were literally running to catch up to him! They thanked Han for the music (Han’s response: “Thank you for all the acting!”) Then they got into a conversation about music and everything. I was just missing it, but Han did say, “This is my girlfriend,” then his wife, said, “I’m Wendy,” and we shook hands, then Beau Bridges shook my hand and said, “I’m Beau.” Wow! It was so very cool. They said they bought all their CDs and just really had a great time. Yay!

We left shortly thereafter, stopped at McDonald’s, and headed back to the folks’. I don’t recall feeling poorly, but by the time I got home, I felt like my feet were just going to pop right off the bottom of my legs. My skin was tight and swollen, and the spots hadn’t gone away. In fact, there were more. My mom put some anti-inflammatory cream on them for me, and I went to sleep (on the couch).

On Sunday, I felt a little better, but the spots persisted. I was becoming a little worried. But other than the spots, I felt totally fine! That day was Easter, and the day before Dad’s birthday, so the whole Wann/O’Dell clan was coming over. Mary, Dewey, Betty (sans Lee), David, Rick, Christina, and their baby, Jameson. Mia made Swedish meatballs (or as they call them over there, ‘meatballs’). 🙂

Sandy & I were in charge of appetizers, and we did well. There was a variety of snacks. The meatballs were scrumptious, as were the mashed potatoes, carrots, lingonberry sauce, and hard bread. So yummy. The only downsides were the dog, Pete (Sandy & I drank every time that dog acted up – I’m surprised I’m still not passed out.), and the spots. Later in the afternoon I noticed them on my belly, and I knew this was not something to just let pass.

After the family left, I got my stuff together, said my teary goodbyes and drove straight to the UCSD Medical Center. It was 9 pm. I was discharged at 9 am the next day having befuddled the doctors and having provided pints of my blood for testing, plus some urine, a chest x-ray, and a throat culture. They thought at first it was measles, but it wasn’t. Also, by this time, it was a bit painful. And ugly as can be.

So now it’s Monday (April 21 – happy official birthday, Dad!), and thankfully, I’m detail-oriented or I would have missed that I was told to go to dermatology that day for a biopsy (the discharge nurse hadn’t bothered to let me know that instruction). I went to the dermatologist. They did a biopsy (2 stitches), gave me a prescription for some cream, told me to take ibuprofen, and sent me on my way. I went home and stayed in bed most of the day.

On Tuesday, I stayed home again. The spots were changing. They went from being flat and red to being bumpy and redder. Not itchy, but uncomfortable. And painful. Especially toward the end of the day. I think it was that day that the ER doctor called to follow-up. He told me that it was something called vasculitis, which is an inflammation of the blood vessels. 50% of diagnoses are idiopathic, which means ‘of no known origin.’ The other 50% of diagnoses are related to terrible things like lupus, cancer, or HIV. All of my tests, blood and otherwise, revealed none of those terrible things, so mine is of the variety that falls in the ‘we don’t know why’ category.

I stayed home on Wednesday, too. But I worked. On Thursday, I went back to work, but it was a gingerly thing. I hadn’t yet gotten a routine. The bottoms of my feet hurt. I thought the spots couldn’t be covered much so I wore my Birkenstocks which partially revealed my hideous looking feet. But truly, how often do you notice someone’s shoes? Thankfully for me, not many. I worked on Friday, too, but I cancelled my plans to meet my friend, Heather.

The weekend was mostly spent in bed. I did go grocery shopping but that was about it. You’d think with all this down time, I might get some writing done. You’d be wrong. Lots of HGTV, Food Network, and going back and forth between Candy Crush, Facebook, Words with Friends, Abble Dabble, and Stampede.

The spots seemed to be better after the weekend, but then on Monday (April 28), it was like nothing had changed. I contacted the Cattery and asked to take that day as well as all of May off. They were cool about it. By Tuesday, I was in so much pain, I called the dermatologist who scheduled an appointment for the next day. That day, I learned some new things. The derm told me that when I put my feet up, they need to be above my waist (hadn’t told me that before). He also told me cover it! He said I should slather on the steroid cream, let it ‘soak in’ for 10-15 minutes then add a layer of Aquaphor, then cover that shit, and put my feet up. Now we’re getting somewhere. He also said I should skip acupuncture 😦

There was some issues with my prescription for the cream. They’d prescribed a small tube on 4/21. By the time I went back to the derm on 4/30, I was out. I had tried to refill the scrip, but insurance said it was too soon and wouldn’t pay. So they prescribed a larger amount. Same thing. Insurance wouldn’t pay and the pharmacy almost didn’t fill it because it was such a large amount and hadn’t I just filled a prescription on 4/21? I mean what did they think I was doing with it? So I ended up paying out of pocket for the larger tube ($50+). But I called my insurance and they were able to work it out so I got about a $40 refund.

So now I have a routine. I go about my day, but around 8 pm, I slather up, bundle up, and lay down. Also, I’m taking 600 mg of ibuprofen every six hours. Now last week, it was close to 90 degrees (that’s Fahrenheit) every day. It’s a good thing we have AC in our bedroom otherwise the bundling up would have been a real bitch.

I’ve had to miss stuff: the live taping of an NPR trivia show that I got tickets to for donating to KPBS, my local NPR station. The CD release of The Lovebirds. All in the name of healing. Over the weekend, I did laundry and grocery shopping, but I really took it easy, and I was feeling good.

Monday (May 5), I felt great all day. I was wearing tennis shoes! My feet didn’t hurt. I was seeing progress (meaning less) on my feet (which, did I mention, were hideous?). I got home from work and made dinner (chicken fajitas!) and boom! New spots on my thighs. 😦 Perhaps needless to say, but there were several times over these last couple weeks that I have been in tears – either from pain or frustration.

On Tuesday, I had an appointment at the derm to get my stitches out. I saw her, and I really like her. I explained what I’ve been doing and she said that’s what I should be doing, but she also seemed curious as to why I keep getting new “lesions.” They had me get on my stomach (oh yeah, did I mention they’re also on my ass? that’s a fun time). She and the resident (UCSD is a teaching hospital) were talking amongst themselves as they perused my rump. They said, “We’re going to do a couple more biopsys.” I asked if I’d have stitches again and they said yes, then left the room. I burst into tears. Finally, I pulled it together and when the nurse came in to take out the stitches I already had and to prep me for the next biopsys, I said I’d rather see the doctor before I was prepped. So she took out my stitches and got the doctor (resident). I asked what they hoped to find with these next biopsys, and if they found something, would my treatment change? Her answer was that they were checking if I had a certain kind of vasculitis, even though I’m not showing any symptoms of that kind of vasculitis, and that the treatment would basically be the same. So I said, no thanks. Why would I consent to two additional biopsys that I would have to pay for (at least 20% of) to deal with stitches in my ass and no real new information? She went and told the other doctor, who thought that was reasonable. I said that if I get any of those symptoms (fever, nausea, vomiting, etc), that I would call, otherwise, I’d stick to my routine. I was actually pretty happy that I had said something. Maybe it was the fear of taking care of stitches on my butt, but I usually wouldn’t have said anything, thinking the doctor must know! My next appointment is in three weeks.

My routine this week has changed slightly in that when I get home from work, I lay down and put my feet up for an hour or so. Then I make dinner, hang out with Han, or watch a little TV, then I proceed with the nightly slathering. My feet look a bit better, but nearly every other part of me (legs, arms, belly, butt) continues to go in waves, looking better, looking better, crash, new spots that are red and flat, that are then bumpy and redder and ache.

Nonetheless, I plan to go back to my parents’ this weekend. Sunday is Mother’s Day, plus besides the drive, there’s no place that’s more relaxing. I also will try to reschedule with Heather and see her on Friday.

Through it all, I did stick with my posting a poem a day at work, but my own writing a new poem every day stopped on April 18. It’s a bummer, but my muse must be horrified with my spottedness. Not that I blame her.

And with that, it’s past my slathering time. This post was all about my health and not much about other happenings, but maybe next time.

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One Comment Add yours

  1. Mia says:

    It was so nice to meet you and let’s hope it doesn’t take 3 years until next time!
    I’m so sorry to hear about your health problems. Have they said if it’s rheumatic or not? Vasculitis is if cronic a autoimmune illness. You haven’t seen a rheumatologist?
    You haven’t bee given any cortisonshots? I’m glad you are under care and that they seem to take good care of you.
    Take care! Love you! Big hugs xx
    Mia
    Say hi to your family too 🙂

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